Mia's 91st blood transfusion

 

Here we are again at Mia's 91st...it's only been 3 weeks

since the last transfusion.

Mia had Miss Ashley & Miss Tracy for her nurses.

Miss Ashley knew Mia when she was REALLY

little...we are so happy to have her back, she's fun!

 

She really didn't feel the greatest this time.

 

 

 

But making a Ginger Bread house helped!

 

 

Roaming the halls...

 

It was purple day in POTC - it's the day we

remember a very special little girl named Layla.

She went to be with the Lord 3 years ago, she would

have been 9 years old if she were still alive today.

We will always remember you sweet girl!

 

 

 



Remembering Layla

We will never forget Layla...that's why today is PURPLE day.

London's Run

London's Run is something that I've always wanted to do. This run is so touching and dear to my heart for many reasons. Our family can't help but be around and meet kids with cancer and other life threatening illnesses. After all, Mia herself is in the hospital every 3-4 weeks. This is a picture of little London...she is the reason for this run. (You can read more about her story by clicking the link below.) We never met her, but her story is so touching. She passed away before the first race was even held, and overwhelmingly people wanted the race to continue. I think this year was the 5th year it's been held. Her memory lives on and because of this race, she is helping other kids raise money to help them fight cancer.



http://www.caringbridge.org/visit/londonsolomon

My boot camp friend Alicia and I have been talking about doing this run for a long time. She has a very sweet heart. I happened to see her coming to the 10 am boot camp after I was done with the 9 am boot camp (we both usually go at 5:30 am) the day before the race. So it was meant to be that we were to do London's Run. (By the way, she is an awesome runner, and has done many marathons etc.) We just laughed because neither of us 'trained' for this, but that's ok...we do boot camp!

I also saw my friend Mary Lisa, who has taken it upon herself to lose more than 60 pounds and get active. She is so inspiring!! She just did the PF Changs half marathon, and here she is...ready to do the 10k. Hello?!?! ML you rock girl!

Another inspiring person in my life is Miss Tiffany, one of Mia's nurses who we see regularly. She decided as well that she was going to take charge of her health and lose weight and participte in half marathons etc. She rocks too...AND she is a fellow blogger. Miss Tiffany knew London and had her as her patient. She also knew Layla, and one of the benefactors of London's Run this year, her name is Maliyah.

Miss Tiffany and I @ London's Run

The poster I made and pinned to my back are pictures of Mia, Layla, Ethan, & Trevor. All special kids who I love dearly. All fighting to live a normal healthy life. ~ Layla's memory is always with us...that's why we wear purple! (My favorite color.)

Here we go...10 K - 6.2 miles. Gulp. The farthest I've ever ran is 3 and a half. My goal was to keep going and try not to stop.

It was really pretty through the farm and fields, although it was freezing.

So my friend Alicia rocks at running, and right at the start she was way ahead of me. I could see her in her white shirt and pink shorts...but this picture is blurry.

Ok you had to be there, it looked prettier than this at that moment.

After a while there were all these signs...how inspiring.

What a great reminder of why you are running, and that the money you spent is truly going to help kids fight the battle of their lives.

Gulp...how can you not cry or be touched in some way looking at these pictures??

Ok...I'll try and keep going. Mile 2 I had a side ache...but thought it will go away. It did. By mile 5 I was sooooooo tired, and almost ready to walk. I did stop to tie my shoe at mile 5 but my legs started cramping so I kept going.

Oh finally the finish line...thank goodness!! My time was: 1:00:30
which is good. I just can't help but think if I didn't stop to tie my shoe :)

This is a picture of me about 30 seconds before the finish line:
http://sportshots.exposuremanager.com/p/900am-930am_lr_2011/0922_20110129092213_2718_64_2_2

We will never forget...

Six Purple Balloons

Today we celebrated remembering Layla's life. Her memorial service was this afternoon in California at 3:00 pm, and we were so sad that we couldn't go. So today at 4:00 pm our time, (1 hour time difference - we wanted to do it at the same time) we decided to release 6 purple balloons to represent each year she had on this earth...and in her favorite color. Mia took the news of Layla's passing better than I did. When we told her that Layla had passed away in her sleep, she thought for a minute and said...'So Layla went to sleep and then woke up in the clouds?' (heaven) and I said, 'yes.' She smiled and said...'cool!' Mia did have a hard day at school on Thursday...even Wednesday night she was asking lots of questions, trying to process it all. So her counselor suggested that she write a note to Layla and put it on the balloon...that way she could tell Layla one last thing, to have a chance to say goodbye. This is what she wrote...

Different shades of purple...

Miss Theresa, one of Layla's & Mia's nurses came to be with us wearing a purple flower in her hair in honor of Layla.

So did Miss Jill, another POTC nurse where Mia gets her transfusions. She had a purple flower too. They were thankful to be there with us to remember Layla.

Layla stories...

...always have laughter in them.

Mia's favorite memory of Layla is of when they first met, and they painted 'bug houses.' It was a styrafoam cup turned upside down and they cut out a little door for the bugs to get in and out. Hence, a bug house.

Miss Jill remembering her favortie Layla story...both nurses remember her being sassy. No wonder Layla and Mia got along so well!!! Lol!

Miss Theresa remembering her favorite Layla story...

I will never forget the way Layla helped Mia with getting her flu shot. Usually, they take stuff out of Mia, not inject her. Mia needed to get a flu shot...and she really panicked. Her blood pressure shot up, and Miss Christine said, 'Mia, you need to relax.' So Layla hopped up onto her bed and explained to Mia that if she got the shot in her leg, she wouldn't feel it as much (because Layla had shots all the time) and to take a deep breath and count...there's Layla in the background counting and saying, 'you can do it Mia.'

I brought Mia's photo album of her hospital days with Layla so everyone could look at pictures.
Purple Balloons...

Layla's favorite color was purple...so we got six purple balloons to represent her six years of life. I also got one blue balloon with flowers on it that says,' you'll be missed.' Ashley helped to untie them all.



Mia with her note to Layla taped to her balloon.

Saying a Prayer -

Matt said a really nice prayer before we let the ballons go. It was really heartfelt and I appreciate so much his kind words about Layla, God's purpose and plan, and for her family...

Saying goodbye...

As each balloon went up in the sky...each person said something special to Layla. Ashley noticed that the wind was carrying them west...in the direction of California.

It was nice for me to be able to talk about Layla with the nurses. I have been struggling with just thinking about the finality of everything, I guess from a mom's perspective, as it does hit close to home. It was good.

After we let the balloons go...Mia did get sad. She grabbed my leg and wouldn't let go. All I could do was give her a big hug.

Mia likes to announce things...like when her mom is crying. I'm happy for Layla to be out of any pain and suffering. She truly has touched so many people's lives, even if you didn't know her, I want you to know that she fought hard and had an amazing spirit. Her memory will certainly live on.

Visiting Layla @ POTC

The last time we saw Layla & her mom Nicole was right before Thanksgiving. I pulled Mia out of school, yep, that's right, we 'skipped school' to visit Layla in the hospital. Mia brought her a Jared Box...filled with little toys and fun stuff to keep you busy when you're at the hospital all day. I never posted these pictures and came across them...so I wanted to share them.

The most funniest thing was the flarp. If you don't know what flarp is...it's squishy stuff in a plastic container where it makes...funny noises. Kind of like a tooting sound (lol!) They were laughing so hard, and anytime a nurse or someone came into the room...they would make a noise and say...'excuse you!' I must admit, it was pretty funny. They enjoyed looking at all the stuff in the box together.

I have heard this song so much lately...here are the lyrics. Also, the second song after talks about having a 'Beautiful Ending...' - I'm thankful that Layla had a beautiful ending.

Your Hands -

I have unanswered prayers

I have trouble I wish wasn't there

And I have asked a thousand ways

That You would take my pain away

That You would take my pain away

I am trying to understand

How to walk this weary land

Make straight the paths that crookedly lie

Oh Lord, before these feet of mine

Oh Lord, before these feet of mine

When my world is shaking

~Heaven stands

When my heart is breaking

I never leave Your hands

When You walked upon the earth

You healed the broken, lost, and hurt

I know You hate to see me cry

One day You will set all things right

Yea, one day You will set all things right

When my world is shaking

~Heaven stands

When my heart is breaking

I never leave Your hands

Your hands

Your hands that shape the world

Are holding me, they hold me still

Your hands that shape the world

Are holding me, they hold me still

When my world is shaking

~Heaven stands

When my heart is breaking

I never leave You when...When my world is shaking

~Heaven stands

When my heart is breaking

I never leave...I never leave Your hands

_________________________________________________

"He has the power to bring everything under His control. By His power He will change our earthly bodies. They will become like His glorious body."

~Philippians 3:21